35 replies to this topic

[Buzzm1]

Older Patients With CML at Higher Risk for Mortality, Vascular Events http://bit.ly/1W6cku7

 

Older patients with chronic myeloid leukemia (CML) may have higher mortality and rates of vascular events such as myocardial infarction, stroke, and pulmonary embolism compared to patients without cancer, according to a study published in Clinical Lymphoma, Myeloma & Leukemia.1

 

Mortality and Vascular Events Among Elderly Patients with Chronic Myeloid Leukemia (CML): A Retrospective Analysis of Linked Seer-Medicare Data - Clinical Lymphoma Myeloma and Leukemia http://www.clinical-...0052-5/abstract

[r06ue1]

Hopefully they will have this cured in the next five years like my doctor at Seidman told me they would.

[kat73]

In the immortal words of Olive Kittredge, "Well, isn't this just DUCKY."  What next?  The discovery that long-term use of TKIs cause the growth of two heads?  I blankety-blank give up.  Now ANOTHER thing to worry about.  OK, what do we need to do to solve this one?  Is the takeaway to get off the darn things ASAP?  Or to jump off a bridge at 65?

[tinman1939]

I'll be 62 in a couple of months. I like to plan ahead, including for my retirement. Given this study, I may move up my early retirement plans by several months. My initial plan was to retire in May 2018 at age 64. The only reason I'd wait that long is to get a few hundred bucks more per month from my pension. But, is it worth waiting the extra months to retire when a study such as this one shows much higher mortality rates and higher rates for vascular events for those of us on TKIs in our "glory retirement years?" Something to ponder, indeed.

[rcase13]

Yeah love reading this stuff when I am only 45.

[RayT]

I'll be 62 in a couple of months. I like to plan ahead, including for my retirement. Given this study, I may move up my early retirement plans by several months. My initial plan was to retire in May 2018 at age 64. The only reason I'd wait that long is to get a few hundred bucks more per month from my pension. But, is it worth waiting the extra months to retire when a study such as this one shows much higher mortality rates and higher rates for vascular events for those of us on TKIs in our "glory retirement years?" Something to ponder, indeed.

So, a single study says that those over age 66 with CML had a 63% mortality over 5 years vs 23% non-CML individuals.  INDIVIDUALLY, we all have a 100% mortality rate; all of us WILL die.  The article does not give the mean or median ages of the subjects.  Maybe most were in their 90s!  

 

 I retired from full-time work at 55 last year due to health and Gleevec side effects.  I had a heart attack and subsequent CHF when I was 25, thanks to chemo Tx for Hodgkin's Disease. I also now have severe sleep apnea, COPD and CML, thanks to 9/11 Ground Zero work. I have a wife who is 54 and we have a 12yo daughter.  My "early retirement" was driven not only out of my physical inability to maintain a full-time regular work schedule but also by financial worries for my wife/daughter.  Although my pension is smaller, I know that if a I die tonight, my wife and daughter will continue to receive a good portion of that pension after my death.  I wouldn't have been so worried about living long enough to receive my pension if my wife was a neurosurgeon instead of a part-time public school teacher, or if we had David Letterman's or Bill Gate's bank accounts,

 

Each of us has to have conversations with our individual doctors and financial planners, considering our INDIVIDUAL health status, etc. when making retirement decisions.

 

It's good to stay up-to-date on recent research, but when considering the results of a single study, just keep in mind what's happening currently regarding all we "knew to be fact" about sodium, cholesterol, Thimerosal, etc.  I could live to be 90 or I could die tripping/falling when I get up after I hit the "send" button for this note.  

[gerry]

This is an odd article, what data are they using. Plus we are aware that the data now coming out indicates Tasigna could cause vascular issues, yet this article appears to be stating that TKIs don't contribute to this issue.

[Harper3994]

Since I am 69 and was diagnosed July2015 this was not what I wanted to see! Hope a cure is coming soon. Have 6 grandchildren all under the age of 9 and would like to stick around a while longer. Already have A-fib and high blood pressure what's next.

[Buzzm1]

Managing Toxicities from CML Treatment https://shar.es/1C9Eda

 

Jorge Cortes, MD: Let me ask you, Javier. One of the biggest concerns that we have recently is the issue of the cardiovascular adverse events that we're starting to recognize more in the setting of the tyrosine kinase inhibitor (TKI) therapy. Some drugs may have a little bit more than others, but we're seeing it with many of them. So, that brings [up] a question of how do you follow a patient for these side effects, again focusing on these arterial thrombotic, events and do you do it by yourself? Do you engage one of your cardiologist colleagues or somebody else in assessing this? - See more at: http://www.onclive.c...h.psmxbrT4.dpuf

[gerry]

Glivec actually controlled my blood pressure and cholesterol, I was able to come off these meds while on it. Since stopping I've had to return to taking the BP med and am trying to sort out which cholesterol med I can take without too many side effects. Family history is heart issues, so I was/am in line for it anyways.

[soundoff]

Great...Anything else they want to tell us?

[jmoorhou]

Really, thanks for sharing over paid professors.....hey what the hell else do you think elderly people die of......

[crob20]

This study, best I can tell, is retrospective Medicare data. It looks like treated people with CML weren't among the ones who died. My take away was to get a cardiologist to manage my B/P meds. My Primary care office felt too scattered to me. I'd see someone different each time and didn't feel consistently monitored. The live Onc article was interesting, but getting a cardiologist involved was my take-away. An annual physical should include cholesterol screening. I wouldn't retire early based on this article.
Carol

I haven't had high cholesterol since being on Gleevec

[Gail's]

I love what the last paragraph in the article said about drug side effects and how we patients hear 'you'll be on this drug the rest of your life' then when the side effects come we think ' this is how I'll feel the rest of my life.' At least the doc quoted recognized the impact on quality of life and checks in with his patients frequently

[Buzzm1]

which is why, at my age, I am doing everything I can to at least reduce my TKI dosage to as low as possible, if I am unable to get off of it entirely.  My most effective consistent continuing argument with my Onc has been that I want to attempt to regain as much quality of life as possible during my remaining years.  The side effects/toxicities of TKI's aren't anything to ignore, especially among older patients; when the opportunity to lower our dosage becomes feasible, we should avail ourselves of it.  It's, at the very least, a good topic for discussion.  

[r06ue1]

These drugs are toxic, they are harmful to our bodies tissue, if you can go off it or lower the dosage even the less impact it will have on you.  I'm still grateful to the scientists who created them and hope they can come up with less toxic solutions in the future.

[kat73]

Buzzm - That's the exact exchange I used with my onc the last visit - and here I thought I was using such an original argument!  I do think it's one of the most persuasive.  I totally get it that if you've got a CML 30 year old, you want to get them to PCRU fast and nail it hard.  They're young, healthy and tough and can take the SE.  They're motivated because they justifiably think this might not have to go on for them forever.  For the older patient, however, maybe we're pushing a little too hard.  If I could lessen SE and feel good, and do less damage to various systems that could otherwise bite me in the future (like the cardio stuff), then maybe living in the MMR vicinity could be an acceptable place to stop and abide.  I think the tide is turning for us and soon they're going to be allowing intermittent dosing or cessation with close monitoring for older patients, or at least reducing by half the ordinary dose younger people take - if not just for SE and QoL issues, then for the emerging long term toxicities that actually threaten mortality.

[Buzzm1]

Hopefully the norm will become lowering dosage after reaching, and verifying, PCRU, if not ceasing TKI dosage entirely.  After my own experience, I cringe when I read of someone being PCRU for an extended period of time, yet is still taking the initial recommended dose.  TKI's are toxic; If we aren't going to attempt cessation, we should at least try to lower the dose to a minimal maintenance level, whatever that may be.  

 

In cases where a patient is unable to reach PCRU, but has plateaued under MMR for a given period of time, it is still likely that they will be able to maintain that level on a lower TKI dosage.  

[Buzzm1]

Tomorrow I go in for an ultrasound on my legs.  I've been experiencing severe cramping after walking a short distance. 

[beno]

Hopefully the norm will become lowering dosage after reaching, and verifying, PCRU, if not ceasing TKI dosage entirely.  After my own experience, I cringe when I read of someone being PCRU for an extended period of time, yet is still taking the initial recommended dose.  TKI's are toxic; If we aren't going to attempt cessation, we should at least try to lower the dose to a minimal maintenance level, whatever that may be.  

 

In cases where a patient is unable to reach PCRU, but has plateaued under MMR for a given period of time, it is still likely that they will be able to maintain that level on a lower TKI dosage.  

My first onc and I told me at my 6 month appt that I need to "accept the fact that I'm diminished and quit comparing how I feel and perform today versus how I felt and performed before CML"  Five minutes later, I asked about at what point would I need to reach where she would feel comfortable lowering my dose of Sprycel.  She said she wouldn't ever consider lowering it unless I had multiple pleural effusions and asked me why I would even want to lower the dose of the drug because it was working.

 

I just shook my head.  I knew she was leaving and my next appt would be with a new onc so I just dropped it.  Fortunately, my new onc appears to have some concern for my quality of life and said she would happily reduce my dose once I hit MMR.